{"id":12296,"date":"2025-06-04T17:35:51","date_gmt":"2025-06-04T15:35:51","guid":{"rendered":"https:\/\/www.afaf.asso.fr\/?p=12296"},"modified":"2025-06-04T17:40:17","modified_gmt":"2025-06-04T15:40:17","slug":"enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys","status":"publish","type":"post","link":"https:\/\/www.afaf.asso.fr\/2025\/06\/04\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\/","title":{"rendered":"ENQU\u00caTE\u00a0AFAF:\u00a0RESSENTIS EN VIE R\u00c9ELLE DE PATIENTS SOUS SKYCLARYS"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-post\" data-elementor-id=\"12296\" class=\"elementor elementor-12296\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-48241fef elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"48241fef\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-1e1f5b69\" data-id=\"1e1f5b69\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-3933fc8 elementor-widget elementor-widget-text-editor\" data-id=\"3933fc8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p><\/p>\n<p class=\"wp-block-paragraph\">En France, des personnes atteintes de l\u2019ataxie de Friedreich (AF) b\u00e9n\u00e9ficient actuellement d&#8217;un traitement, le Skyclarys, prescrit selon une proc\u00e9dure sp\u00e9cifique dans une maladie rare, appel\u00e9e Acc\u00e8s Pr\u00e9coce.<\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\">Comme nous l&#8217;avons d\u00e9j\u00e0 fait en octobre 2024, nous vous sollicitons pour une <strong>enqu\u00eate de vie r\u00e9elle<\/strong> sur vos ressentis avec le Skyclarys, pour appuyer le dossier aupr\u00e8s des autorit\u00e9s de sant\u00e9.<\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\">Nous avons besoin du retour de tout le monde, que vous preniez le Skyclarys ou non. Vos retours sont primordiaux pour l&#8217;ensemble de la communaut\u00e9 AF dans le monde. Ils nous permettront de faire remonter aux instances, des \u00e9l\u00e9ments de vie r\u00e9elle, c&#8217;est-\u00e0-dire votre quotidien, qui ne sont pas \u00e9valu\u00e9s actuellement avec les \u00e9chelles de mesure utilis\u00e9es.<\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\">Ce questionnaire cible principalement vos ressentis depuis la prise du Skyclarys. Vos proches ont aussi la parole \u00e0 la fin du questionnaire. Ils peuvent ainsi s\u2019exprimer sur les changements qu\u2019ils observent chez vous.&nbsp;<\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\">Les donn\u00e9es collect\u00e9es par le biais de ce formulaire sont anonymes. Aucune donn\u00e9e \u00e0 caract\u00e8re personnel ne sera recueillie. Elles sont enregistr\u00e9es et feront l\u2019objet d\u2019un traitement par l&#8217;AFAF afin de proc\u00e9der \u00e0 une analyse de l&#8217;effet du traitement du Skyclarys aupr\u00e8s des malades de l&#8217;AF. Les r\u00e9sultats de cette enqu\u00eate seront rendus publics par l&#8217;AFAF et publi\u00e9s notamment sur le site Web de l&#8217;AFAF.<\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\"><strong>Nous vous invitons \u00e0 renseigner ce rapide questionnaire avant le 30 juin 2025&nbsp;:<\/strong><\/p>\n<p><\/p>\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/pourafaf.limesurvey.net\/EnqueteAFAF?lang=fr\" target=\"_blank\" rel=\"noopener\">https:\/\/pourafaf.limesurvey.net\/EnqueteAFAF?lang=fr<\/a><\/p>\n<p><br><\/p>\n<p>Cordialement,<\/p><p class=\"MsoNormal\" style=\"margin-bottom:0cm;text-align:justify;line-height:\nnormal\"><span style=\"font-family:Roboto;mso-fareast-font-family:Roboto;\nmso-bidi-font-family:Roboto\">L\u2019\u00e9quipe AFAF en charge de ce dossier<o:p><\/o:p><\/span><\/p>\n<p><br><\/p>\n<p><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8e7f9a5 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"8e7f9a5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-94c9380\" data-id=\"94c9380\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-9c0c52e elementor-widget elementor-widget-image\" data-id=\"9c0c52e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"300\" height=\"300\" src=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-300x300.png\" class=\"attachment-medium size-medium wp-image-12298\" alt=\"\" srcset=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-300x300.png 300w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-150x150.png 150w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-768x768.png 768w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-600x600.png 600w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin-100x100.png 100w, https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2025\/06\/AFAF_QRcode-Enquete-juin.png 1024w\" sizes=\"(max-width: 300px) 100vw, 300px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>En France, des personnes atteintes de l\u2019ataxie de Friedreich (AF) b\u00e9n\u00e9ficient actuellement d&#8217;un traitement, le Skyclarys, prescrit selon une proc\u00e9dure sp\u00e9cifique dans une maladie rare, appel\u00e9e Acc\u00e8s Pr\u00e9coce. Comme nous l&#8217;avons d\u00e9j\u00e0 fait en octobre 2024, nous vous sollicitons pour une enqu\u00eate de vie r\u00e9elle sur vos ressentis avec le Skyclarys, pour appuyer le dossier [&hellip;]<\/p>\n","protected":false},"author":8,"featured_media":9137,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"ocean_front_end_style_editor":"no","ocean_post_layout":"","ocean_both_sidebars_style":"","ocean_both_sidebars_content_width":0,"ocean_both_sidebars_sidebars_width":0,"ocean_sidebar":"0","ocean_second_sidebar":"0","ocean_disable_margins":"enable","ocean_add_body_class":"","ocean_shortcode_before_top_bar":"","ocean_shortcode_after_top_bar":"","ocean_shortcode_before_header":"","ocean_shortcode_after_header":"","ocean_has_shortcode":"","ocean_shortcode_after_title":"","ocean_shortcode_before_footer_widgets":"","ocean_shortcode_after_footer_widgets":"","ocean_shortcode_before_footer_bottom":"","ocean_shortcode_after_footer_bottom":"","ocean_display_top_bar":"default","ocean_display_header":"default","ocean_header_style":"","ocean_center_header_left_menu":"0","ocean_custom_header_template":"0","ocean_custom_logo":0,"ocean_custom_retina_logo":0,"ocean_custom_logo_max_width":0,"ocean_custom_logo_tablet_max_width":0,"ocean_custom_logo_mobile_max_width":0,"ocean_custom_logo_max_height":0,"ocean_custom_logo_tablet_max_height":0,"ocean_custom_logo_mobile_max_height":0,"ocean_header_custom_menu":"0","ocean_menu_typo_font_family":"0","ocean_menu_typo_font_subset":"","ocean_menu_typo_font_size":0,"ocean_menu_typo_font_size_tablet":0,"ocean_menu_typo_font_size_mobile":0,"ocean_menu_typo_font_size_unit":"px","ocean_menu_typo_font_weight":"","ocean_menu_typo_font_weight_tablet":"","ocean_menu_typo_font_weight_mobile":"","ocean_menu_typo_transform":"","ocean_menu_typo_transform_tablet":"","ocean_menu_typo_transform_mobile":"","ocean_menu_typo_line_height":0,"ocean_menu_typo_line_height_tablet":0,"ocean_menu_typo_line_height_mobile":0,"ocean_menu_typo_line_height_unit":"","ocean_menu_typo_spacing":0,"ocean_menu_typo_spacing_tablet":0,"ocean_menu_typo_spacing_mobile":0,"ocean_menu_typo_spacing_unit":"","ocean_menu_link_color":"","ocean_menu_link_color_hover":"","ocean_menu_link_color_active":"","ocean_menu_link_background":"","ocean_menu_link_hover_background":"","ocean_menu_link_active_background":"","ocean_menu_social_links_bg":"","ocean_menu_social_hover_links_bg":"","ocean_menu_social_links_color":"","ocean_menu_social_hover_links_color":"","ocean_disable_title":"default","ocean_disable_heading":"default","ocean_post_title":"","ocean_post_subheading":"","ocean_post_title_style":"","ocean_post_title_background_color":"","ocean_post_title_background":0,"ocean_post_title_bg_image_position":"","ocean_post_title_bg_image_attachment":"","ocean_post_title_bg_image_repeat":"","ocean_post_title_bg_image_size":"","ocean_post_title_height":0,"ocean_post_title_bg_overlay":0.5,"ocean_post_title_bg_overlay_color":"","ocean_disable_breadcrumbs":"default","ocean_breadcrumbs_color":"","ocean_breadcrumbs_separator_color":"","ocean_breadcrumbs_links_color":"","ocean_breadcrumbs_links_hover_color":"","ocean_display_footer_widgets":"default","ocean_display_footer_bottom":"default","ocean_custom_footer_template":"0","ocean_post_oembed":"","ocean_post_self_hosted_media":"","ocean_post_video_embed":"","ocean_link_format":"","ocean_link_format_target":"self","ocean_quote_format":"","ocean_quote_format_link":"post","ocean_gallery_link_images":"on","ocean_gallery_id":[],"footnotes":""},"categories":[43],"tags":[],"class_list":["post-12296","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-informations_recherche","entry","has-media","owp-thumbs-layout-horizontal","owp-btn-normal","owp-tabs-layout-section","has-no-thumbnails"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ENQU\u00caTE\u00a0AFAF:\u00a0RESSENTIS EN VIE R\u00c9ELLE DE PATIENTS SOUS SKYCLARYS - Association Fran\u00e7aise Ataxie de Friedreich<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.afaf.asso.fr\/2025\/06\/04\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ENQU\u00caTE\u00a0AFAF:\u00a0RESSENTIS EN VIE R\u00c9ELLE DE PATIENTS SOUS SKYCLARYS - Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"og:description\" content=\"En France, des personnes atteintes de l\u2019ataxie de Friedreich (AF) b\u00e9n\u00e9ficient actuellement d&#8217;un traitement, le Skyclarys, prescrit selon une proc\u00e9dure sp\u00e9cifique dans une maladie rare, appel\u00e9e Acc\u00e8s Pr\u00e9coce. Comme nous l&#8217;avons d\u00e9j\u00e0 fait en octobre 2024, nous vous sollicitons pour une enqu\u00eate de vie r\u00e9elle sur vos ressentis avec le Skyclarys, pour appuyer le dossier [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.afaf.asso.fr\/2025\/06\/04\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\/\" \/>\n<meta property=\"og:site_name\" content=\"Association Fran\u00e7aise Ataxie de Friedreich\" \/>\n<meta property=\"article:published_time\" content=\"2025-06-04T15:35:51+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-06-04T15:40:17+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.afaf.asso.fr\/wp-content\/uploads\/2023\/07\/Skyclarys.png\" \/>\n\t<meta property=\"og:image:width\" content=\"349\" \/>\n\t<meta property=\"og:image:height\" content=\"144\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Caroline Gaboriau\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"\u00c9crit par\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline Gaboriau\" \/>\n\t<meta name=\"twitter:label2\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/\"},\"author\":{\"name\":\"Caroline Gaboriau\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#\\\/schema\\\/person\\\/7366aa03c1779ab28140e42231ed7b28\"},\"headline\":\"ENQU\u00caTE\u00a0AFAF:\u00a0RESSENTIS EN VIE R\u00c9ELLE DE PATIENTS SOUS SKYCLARYS\",\"datePublished\":\"2025-06-04T15:35:51+00:00\",\"dateModified\":\"2025-06-04T15:40:17+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/\"},\"wordCount\":292,\"publisher\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/www.afaf.asso.fr\\\/wp-content\\\/uploads\\\/2023\\\/07\\\/Skyclarys.png\",\"articleSection\":[\"Informations sur la recherche\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/\",\"url\":\"https:\\\/\\\/www.afaf.asso.fr\\\/2025\\\/06\\\/04\\\/enquete-afaf-ressentis-en-vie-reelle-de-patients-sous-skyclarys\\\/\",\"name\":\"ENQU\u00caTE\u00a0AFAF:\u00a0RESSENTIS EN VIE R\u00c9ELLE DE PATIENTS SOUS SKYCLARYS - 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